Can You Hear Me Now?

Okay, I know, I’m a bad blogger with my inconsistent updates! My treatment didn’t give me back the use of my right hand or improved vision or any of that stuff (yet) that would make this blogging process easier.

I have good days and bad days with my fatigue. I think overall it is better than it was. It seems like before a symptom improves it goes back and forth for awhile and then it stays gone. Like the being able to scratch an itch on my right side without going into major painful spasms. I thought it was a sure thing, then it came back, then went away, came back… now it has been about a week so I think I can safely say it’s gone and I can scratch! So maybe the fatigue will be gone for good soon. My brother’s girlfriend commented today that my eyes definitely look better, like they are in focus. That hasn’t reached my brain yet, but I hope it will! And my bladder… fingers crossed that will improve, too. Today is a pretty good day with that so perhaps it’s starting.

My body has been deprived of proper blood flow for soooooo long. I need to keep reminding myself that this will not happen overnight. But it’s hard when you see your friends jumping up and down 24 hours after their treatments even when they have had MS as long as you. Or handwriting again. Or using a fork. Sigh… we are all different blah blah blah I know.

I owe you an entry all about my trip to Costa Rica. I’m not sure I’ll actually get around to it, there’s too much to type about! Maybe I’ll do a bulleted version at some point. Right now I just want to do an update to show off my new award:

Which I think they just sent to every MS blog they could find, because they told me my “readers voted” but who actually reads this? LOL That’s why I took out their link. If I ever find out it’s the real deal and people voted I’ll give them credit. Until then, they are spam, but I’ll display the badge! Not sure how to put things on my side bar permanently with a Wordpress template.

I am taking a huge step forward with my health. I figured, I spent (well, my family and some dear friends) a fortune going to Costa Rica for a medical procedure that may have saved my life, so what’s the harm in spending more for some other help I really need. I am going off sleeping pills! I am going to end this 8+ year addiction once and for all and end this vicious cycle I have been on for years. You know… the pills don’t work anymore so I need more and I barely sleep anyway but I’m so addicted I can’t even fall asleep in the first place without them… it’s been rough. And the side effects of sleeping pills are surely making my MS symptoms worse than they would be (double vision! Blurry vision! Dizziness! Balance issues! Etc.!) So I was searching for answers and stumbled upon Point of Return and after thoroughly reading through their site I decided to go for it. The fact their lead physician has progressive MS and has managed to keep it in check with nutrition didn’t hurt, either. Before I even received my package I filled out a big questionnaire and then received a lovely personal response from the founder who gave me some great advice and hope. Reading her story in the book they send you made me cry! Although I am not on as many pills as she was (antidepressants, sleep meds, anti-anxiety, pain, you name it) I totally identified with her and the way she described how the pills take over your life and change your personality and the core of who you are. I just bawled and bawled and now believe there is hope for me, too. I am on day 9 of my pre-tapering nutritional build up and will begin tapering next weekend. My doctor wrote a prescription for the compound pharmacy to taper me 5% a week for 20 weeks. They called and told me that made for odd amounts so they would taper me 1/2 mg/week which I agreed to, but now I realize that is 30 weeks instead of 20 so I need to call them on Monday. I don’t want this to take longer than it has to (plus the products are expensive and you need to stay on them while tapering, it’s part of the program and I’m not doing this half way!)

One thing the founder asked me to do is try to cut back on the Ibuprofen I take because that interferes with sleep. I take an extra strength ibuprofen every night at bedtime, and often another one or two throughout the night, because of my hip pain and basic aches and pains my body gets from just not being able to move properly. Been doing that for years. My friend Beth, who used to be a nurse, was here (first time we had hung out in over 20 years, thanks Facebook!) and I asked “what am I supposed to take, if not ibuprofen? It’s the only thing that seems to help…” and she said “Willow Bark. It’s an anti-inflammatory”. And I was all… huh? You can buy willow bark at the health food store so the next day I found some, and have NOT TAKEN AN IBUPROFEN SINCE. It’s amazing! It really works! For headaches, menstrual pain, and all my hip and body pains. I only take 2 at bedtime and don’t need a repeat during the night. Amazing!

Another thing I’ve had to quit is my 5-HTP and calcium supplements. There’s a whole list of things I need to avoid while tapering off sleeping pills, including bananas! Oh, the doctor in Kuwait who is doing all the CCSVI research (Kuwait is one country that has approved the procedure for ALL MS patients to get right away) is swearing up and down that “I am 100% sure that overloaded Calcium is the main reason tor MS- CCSVI . And 72 other diseases”. He suggests stopping calcium and even Vit. D because it is a calcium retainer. “So keep taking Magnesium and B6 till all MS syndromes disappear.” Hm. Interesting. I know of a woman who, after tons of research and reading papers by a “world expert on the entire architecture of the motor neurons in the central nervous system” started taking calcium channel blockers and her MS is in remission. I Know two woman with MS who swear by large doses of B6. So there may be something to all this! No more calcium supplements for me and I better get me some vitamin B6.

In the meantime, I am taking my glutathione and Omega 3 to build up my system so it can handle the Big Sleeping Pill Taper of 2010™ .

I will leave you with this:

This man must be Calgary’s next Mayor.
Click photo for more info!

I realize I am long overdue for an update! I had the angioplasty procedure for CCSVI over 3 weeks ago now, so I know you’re all wondering how I’m doing.

There are two parts to this… the procedure part, and the Costa Rica part. I’ll write about the procedure first, and about the trip itself in another entry.

I was scheduled to undergo testing (blood tests, EKG, ultrasound) on Friday after I arrived, and receive the treatment on Saturday. Since all the updates I was reading on Facebook from others in Costa Rica said they were being delayed for a couple of days, I fully expected that, too. I went for my tests and all was well, they still told me I was scheduled for the following day. The ultrasound showed a reflux in my left jugular and some stenosis in my right. But those of us in the know are aware that these tests are often wrong, the only way to REALLY know is by venography, which I’d be getting at the time of treatment.

Anyway, we went back to the hotel, went for supper, and it wasn’t until we got back to the room after supper that I received the message that my procedure had been postponed until Monday. I figured as much! So was Kim’s, the lady who had been scheduled for the same day as me. We are actually very lucky, because there was a problem with a batch of balloons they received (wrong size) and they only treated one other person after us! Every one else that had been scheduled for the rest of July had to cancel their flights and plans and and rebook for August. Can you imagine! So I’m grateful I was only delayed two days and not 3 weeks.

Anyway, we arrived at the hospital on Monday and were greeted by the beautiful Gloriana, who works for the international department of Clinical Biblica and walks you through everything and translates when required. Her and Isabel, who works evenings, are fantastic. After getting me settled in my room (there was even a futon for Heather to sleep on, the rooms are huge) and seeing my doctor, it was somehow decided that I would go first, and Kim second. Good thing for me, because apparently hers took many hours! She had 5 blockages, I think.

I was brought into OR, transferred to a cold operating table, and hooked up to an IV. There were nurses buzzing around me speaking in Spanish, prepping me. I felt the anesthetic and sedative going in (it stings) and then the next thing I remember was waking up back in my hospital bed and wondering how I got there, and being wheeled back to my room. The difference between treatment in Costa Rica and every other hospital in the world that does this, is that they knock you out. I mean, apparently I was awake and chatting the whole time, and I said it hurt when they ballooned me, but I have NO memory of that. I like the way other clinics keep you awake and aware throughout the entire procedure so you can see the monitors and know everything that is going on. Some friends even said they could feel sensations coming back into their fingers or something at the exact moment they were ballooned. That would be cool.

Anyway, Dr. Fallas has his reasons for doing it his way and I’m not going to argue with a vascular surgeon. The first thing I noticed as whey wheeled me back was that both my feet were sticking up. You know how, when you lie in bed on your back, your feet stick up, and it’s like two little teepees? Well, for years my left foot has been the teepee and my right foot laid flat down like it was just dead. So here they were, both making dents in the blanket. So I knew something good had happened.

Back to my room for the night. I was sleepy from the sedative. Heather came in to spend the night with me after going out for the evening (she made friends with our cute driver, and he took her out and about a few times!)

The next morning I will say I thought my vision had improved, everything was brighter and clearer. This gives me hope that I WILL get that back… at the time it didn’t last long, by the time we got back to the hotel and the humidity it was back to it’s old self. I blamed that, and feeling crummy, on the humidity and discomfort I felt in Costa Rica, but I have been home for 2 weeks now so I can’t blame that anymore.

Dr. Fallas came to visit me that afternoon with his Macbook, to show me all the images from my venogram and ballooning. As I had suspected, there was stenosis in my left jugular and NOTHING wrong with my right one (he looked at every possible angle and was surprised by that, but I assured him all my problems are on my right side so I expected that the blood flow to my left side was normal). He said my jugular ballooned very easily and stayed open, so no stents were used. They only use them if the vein won’t stay open. I also had 40% stenosis in my azygos vein, which he also ballooned. I had told him pre-op to put a stent in and signed a waiver and everything, but he said it wasn’t bad enough to warrant a stent, that he wouldn’t even put one in an artery with 40% stenosis. The re-stenosis rate on the azygos has been 0% anyway, so I’m not worried. God intended for us to have 100% blood flow through our veins, so 40% less is a lot, even if it’s not “bad enough” to warrant a stent (my friend Tessa had 95% stenosis there!) He gave me a copy of the DVD so if I ever want to see my veins I can watch it.

I was back at the hotel by Tuesday evening, and physio started Wednesday morning. Claudio worked with me mainly, as Gaby is a tiny woman and although she is strong, I need a big man to work with me! Someone who could hold me up if I was going to fall… Gaby would be crushed by my weight! Not safe for either of us. My daily exercises were great, and torture, but great. I do wish I could have brought Claudio back with me!

A week later and two days before I left I had a follow up Doppler by Dr. Fallas. It only took him a few minutes to show me how my blood was flowing nicely through my jugulars! He gave me his card and told me to keep in touch, to keep him updated on how I’m doing in months to come. They are keeping good records and will publish their results, as other doctors around the world are doing, so soon we will have the documented results the MS Society and neurologists and nay sayers keep saying are needed, not just “anecdotal”. Because a billion before and after videos on You Tube will never be enough.

The differences I saw in CR were that sitting to standing was easier (I could usually get up on my first try instead of 2-3 and often needing help), I could take deep breaths, and my sense of smell improved. These improvements sort of came and went over the past few weeks, but now that I have been home for awhile and living in my new body I can say the following improvements seem to have settled in:

• Sitting to standing is easier
• Foot spasms have decreased
• My voice is stronger
• There is more colour in my face
• I can take deep breaths, oxygen is better
• My sense of smell is better - I can smell my own B.O. now
• I can scratch; it used to be every time I had an itch down my right leg or the right side of my groin or pretty much anywhere on my right side, I would break into these painful seizure like spasms with my right foot, leg, arm, hand… it was so annoying. Now I can comfortably scratch an itch without the spasms. I did scratch the right side of my back yesterday, and spasms broke out, so perhaps the blood flow hasn’t reached that part of my brain yet!
• Yesterday I had my first pedicure since the treatment, and for the first time in YEARS my right foot didn’t jump uncontrollably when she went to trim the nails and push back the cuticles. Normally she has to be very patient with that foot as it would jump in her face every time she tried to do anything. Yesterday she held each toe to do her thing, and we were both amazed that my foot behaved, didn’t jump or flicker, nothing! It was as calm and normal as my left foot!
• My balance does seem a bit better.

The above are all things to celebrate, and that is what I am trying to focus on. What makes it difficult, however, is that some pretty major things are worse: my bladder is crazier than before, my vision is worse, my walking is worse, I’m weaker, my feet are more numb, my energy is… I dunno… I think my vision makes everything seem worse because I don’t feel safe to move. The double vision is worse than before, although my dad swears when he looks at me, my eyes are lined up better. So I don’t know.

What I think is going on is that my body A) doesn’t like these blood thinners (I have about a week left I think) and B) needs time to adjust to the new blood flow and heal. I know I don’t like the blood thinners because I have bruises all over my legs (and my belly, but that is the pin cushion so it’s expected), I wake up every morning with insane dry mouth, and no matter how much water I drink (which is a lot) I can’t get clear urine, which is my goal. Then I read blood thinners make your urine dark and your mouth dry, which explains those things!

Friends have been telling me they have heard about people who, after the treatment, saw no improvements for months. Some were getting worse and thought they had re-stenosed, until weeks later they suddenly started getting better. So I strongly believe that is what’s going on with me. I went to my own doctor last week and got some blood tests, which all came back normal, so I really think once I’m off blood thinners and give my body time, I’ll feel a lot better. I’m also taking some parasite cleanse supplements from my chiropractor, because that can’t hurt. Parasites don’t show up in regular blood tests. I’m also seriously considering chelation therapy.

As for the colour in my face, let’s compare. These pictures were both taken by Heather with the same camera, no make up:

Obviously, the lighting at the airport before we took off (left) and the doctor’s office (right, 10 days later) are different, but I still think there is a big difference. Everybody who sees me now says something, so it must be true!

I live in hope that my worsening symptoms must improve, because proper blood flow can NOT be a bad thing. The only logical explanation is that my body is adjusting and trying to figure out what to do with this blood flow. And since my very first symptom back in 1987 was problems with my vision, I am expecting that may take awhile to correct. But it WILL.

To brighten up this entry a bit, I will leave you with this photo of the garden outside our hotel in Costa Rica, and to see my collection of pictures (I didn’t take as many as I would have liked, my camera wasn’t always with me) here is the link to my public album on Facebook. Remember that link will expire, so look now!

(ETA: The You Tube videos didn’t embed while I was working on the entry, but they did when I published. Go figure).

This will be my last update before I go to Costa Rica for my treatment! It’s angioplasty, by the way. We are no longer calling it liberation treatment (as much as I love that name) or CCSVI treatment because that just continues to allow the government and the medical community to call it “experimental” and “new”. It’s NOT new, it’s angioplasty of the veins. The same procedure is done every day for cancer patients and kidney dialysis patients and others. It’s only when you have MS that you are denied the treatment. And part of the problem is the new name it has been given for when it comes to MS. But it’s not a new procedure, so we need to stop calling it that.

I’m traveling to Central America and spending $20,000 to get angioplasty, a treatment available to anyone else for any other reason, in their own country. How fucking ridiculous is that?!

So, I moved last weekend. What a chore! My friends and family are amazing. They worked their arses off. We had Jackie, her husband Robin, their two kids, Jason (and he brought two teenagers to do some heavy lifting, Seb and Nick), Sheldon, Damien, Shawna, and later on Kim and Rob joined us at this end for picture hanging, fix-ups, last minute bring overs, etc. My mom supervised the furniture arrangements at this end. Shawna was in charge of the cats, which worked out well. First we locked them in my office at my old place until my bedroom was set up over here. Then they were brought over and locked in my bedroom until all the furniture was moved in. Then the door was opened and Pepper, traumatized, stayed in my closet, while Pita came out and snooped around and hissed at everyone. Business as usual.

I can’t believe they got pretty much everything done! I mean, pictures hung?! And thank God Kim was here for that, as she is an interior designer and has a great eye. My walls have never looked better.

It took Pita a couple days to calm down and get used to this place, but she seems fine now. Pepper hid in my closet for a few days, only making an appearance on my bed at night, then she slowly started hanging out in the main rooms. But only when it’s me, with or without my home care only. She hasn’t come out when other people are around. I feel bad because I’m going away, and she’s going to hide in my closet forever! She’s so sweet, I wish she wasn’t so skittish. I don’t know where that comes from. Pita’s personality I understand. She’s psycho, and it totalhy makes sense. But Pepper? I don’t know.

On moving day Jason was showing me how to film myself on my Macbook (for pre and post procedure videos) and it turned into an impromptu interview:

I can’t get videos to embed on here for some reason so here is the link: Pre-CCSVI “Interview”

I’d love to say I’m much happier here, in new and fresh surroundings. I do love the floors and counters and all that. But I HATE the fact that everything is backwards here. Everything is on the wrong side. Light switches. Doors. I can’t get to my fridge. My exercise table is turned around (it has to be) and it’s harder to get on and use my chi machine. Because the bathroom is bigger and set up differently, there is no counter beside the toilet to push myself up. A pole can’t go in there because it has a drop ceiling and the pole would go right through, so I had to get bars installed around the toilet. This is a pain because… well, I need room to position myself for wiping, and I no longer have that. My bedroom is smaller and it’s harder to get to my bed for some reason. I don’t know, it’s just all very upsetting right now. I’m hoping all this stuff won’t be an issue when I get back. I can’t use a walker and be able to get to my fridge. So… that has to change! I need to be able to get around my kitchen without a walker. Or get a new fridge. I know what I’d rather do!

I made a pre-procedure walking video:

And since I can’t embed, here is the link: Pre-Procedure Walking

Ah, Pepper has joined me for a bit. It’s nice to see her out here.

Then today I recorded myself in what was supposed to be me talking about my current symptoms and how my life works, but I ended up babbling mostly about my chi machine. There was a lot more I wanted to say about my mobility and needs, so maybe I will do another one. I just want my pre-procedure stuff on record. So there is this for now:

Aaaaaand since it won’t embed (all the coding is there, it just doesn’t show up for some reason) here is the link: Pre-Procedure Babbling

That was all written yesterday! Then my mom and Bob came over and we packed. I think I’m pretty much ready to go except for the last minute stuff. My dad picked me up the nicest hot pink suitcase with a matching carry on tote. I love it, and it sticks out! No man will try to steal it and it won’t get lost amongst all the black luggage.

Today I went to the bank to deposit more money and pick up some US cash. And test out my new credit card, I just activated the replacement and had to make sure it worked! I am now set for anything… lots of room on the credit card for the hotel, meals and related expenses charged to our room (like the driver for extra trips outside of what is covered) and cash in the bank for grocery shopping (we have a suite with a kitchen) and emergencies. And tipping. Now I just need to hear from Heather so I stop panicking. What if she died over the weekend?? WTF! She has to be fine and ready to come over Wednesday and leave with me at the ungodly hour of 4:00 am.

And spend the whole freakin’ day traveling and sitting in the Houston airport for 6 hours. Thursday is going to be the longest day of my life!

I have had many pre-Costa Rica visitors. Lisa, Russ and Lisa’s mom Maria even came over on Wednesday and brought supper (and a Costa Rica contribution!) Yummy chick pea curry, with leftovers for the following day.

Heather just called. All is well. I didn’t realize my voice mail is screwed up since I moved and I had no idea there were, like, 10 messages in there.

I fell. Went to the bathroom, and on my way out, I just toppled backwards and fell. No tripping, nothing to blame except my bad balance and the awkward position of the bathroom door. Sigh. So I fell backwards and landed on my ass on the bathroom floor (lucky I am cushioned there) and hit the back of my head. I managed to sit up long enough to grab my cell phone and call my dad. Then I called the rental office and told them what happened and asked if they could send Matthew over, as I knew it would take two. So they arrived around the same time and got me up. Now I’m sitting in my chair with a headache, but I have pee’d twice since then with no more falls so I think I’ll be okay. That was the LAST FALL OF MY LIFE, I promise. Looking forward to bed tonight!

Anyway, what was I saying… oh yeah, visitors. And phone calls. Lots of well wishers! I hope to see my other friend Lisa tomorrow.

My head hurts so I’m gonna go breathe with my eyes closed for awhile. See you on the other side, healthier and happier! YAYAYAYAY!

I forgot to mention in my last post that when I saw The Polyjesters, they played their song “Manjula”, which I had forgotten has the line “Costa Rica’s gonna blow you away!” in it. Being the person who spent hours reading and editing their lyrics for their last CD you’d think I’d know that, but I had forgotten, so that was an awesome sign. They looked at me and grinned while they sang the line, and I was all, oh, did they change it for me? But no, that’s the lyric. Other good signs recently include my home care worker’s brother, who lives nowhere near here, just happened to be walking by as she was leaving, so she called him over to introduce me as “he lived in Costa Rica for 10 years”. Then my mom’s co-worker saw a bird she had never seen before, looked it up online, and it’s originally from Costa Rica. WHAT are the chances? Signs.

Last Monday was a great debate in the House of Commons about CCSVI, and MP Kirsty Duncan read my email. I TOLD you she was my BFF. Kirsty Duncan for Prime Minister! If you live in the Etobicoke, Ontario North riding you must vote for her next election.

So, I am moving this week. My mom was here this past weekend and we went through ALL my clothes. Shawna came over and left with a new wardrobe. I sent six big bags to the Salvation Army. It is DONE. For now… I actually discovered a lot of clothes that will be great to wear in Costa Rica! I mostly wear yoga pants (a size too big) these days because I do the stretching exercises with home care every day and they’re super easy to pull up and down for the toilet. All my summery pants aren’t as easy/loose fit, but, I’m predicting I won’t need that emergency access in Costa Rica after treatment. I’m seriously keeping my hopes up higher than people say you should, because I believe in the Law of Attraction and that I can create this better life. This is really it for me, I know it is! I’m going to get my life back! I watched Kerri and Omar running today. She is an Aussie (3 months Liberated) and he’s from England (one week Liberated) and they met up. The internet is bringing CCSVI friendships together like crazy! I can’t wait to meet the gang that will be in Costa Rica at the same time as me, I’ve been chatting with a lot of them on Facebook.

Hmmm somehow I went from talking about my move, to my Liberation in Costa Rica. Not sure how that happened?! Anyway, yesterday I went to the new apartment with my O/T and the guy installing the bars in the bathtub. Sam was mighty impressed with the new digs, that I could even go right into the bathroom and up to the sink in my wheelchair (NOT THAT I’LL NEED TO) and even through the kitchen. It’s the same sort of galley kitchen as here, but it is a good 6 inches wider than this one. And White! Appliances! Cupboards! New Floors! Counters! I’m really going to like living there. Except the entrance needs to be re-paved drastically, it was a wheelchair dance to find the safest route to the door. Argh. This whole complex needs repaving, the parking lot is terrible!

Anyway, I get keys tomorrow and do the walk through, then we start moving over boxes. Mom is coming tomorrow and staying through the weekend. The BIG moving day is Sunday, if you’re around… pizza, beer…

That was written several days ago, naturally. It is now Saturday and we are in the process of moving. My mom has been staying with me since Wednesday and has taken over loads of stuff in a grocery cart! She’s already set up my kitchen. My brother was here on Thursday and took all the boxes over. Not that there are many… most things can be tossed in a cart and wheeled over. My friend Lisa and her hubby Tim are coming over soon, hopefully the bathroom shelves and storage room can get moved. And anything in a closet that hasn’t been moved yet.

Tomorrow some Polyjesters are coming (Jason’s fiance is having her bridal shower, so it’s not like the boys can go anyway!) and some other friends and we will get ‘er done. I have to go sort my office now and get a few things done. I’ll see ya in the new apartment.

TWO WEEKS UNTIL I AM LIBERATED!

There are so many people on my Facebook friends list that are getting Liberated these days, I can’t keep track! I feel bad for the people who are just looking into it now… the waiting lists are insane. I was relatively late in the game to sign up for treatment but at least I’m not trying to get on lists now and being told I’ll be waiting until 2011. I’m sure Dr. Simka in Poland (the most well versed in this) is 2012. One month for me! One month until Liberation! Hopefully more clinics keep opening. It doesn’t look like they’ll be allowing it here anytime soon.

With the help of family and friends I have received about $8,000 of the approximately $20,000 I need for this life saving procedure. It’s like I read in a newspaper article yesterday, the 5-10 years of research they want to complete before they’re willing to make it available to us is JUST.TOO.LONG. “People will be in wheelchairs by then, and those already in wheelchairs will be dead”. Enough said. I’m going to save my life. I swear I am getting worse by the day, especially if the past 24 hours is any indication, so Liberation cannot come soon enough.

Besides the crapfest which was the past 24 hours, a new symptom has reared its ugly head in a whole new way (it used to pop up sometimes… now it’s life altering). OXYGEN. By the end of the day or when fatigue sets in especially, I’m not able to hold a conversation. The exertion is too much for me. I have trouble taking decent breaths and choke a lot more than I used to. These are definitely symptoms of CCSVI so I hope they clear up after Liberation. I found out that my severe morning hiccups are part of this, too! Good to know. Various home care workers have told me it means “someone is thinking of you” but I don’t know who would be thinking of me at approximately the same time every morning.

Speaking of home care workers, the one I had today to help me get to/from the mall told me a little about her life. She married her cousin when she was 19. Her sister married a cousin when she was TWELVE. Both her brothers married cousins. You see, they do not marry “outsiders” and keep it in the family. Hmmm….

Well, I guess we are all related, as Dr. Wayne Dyer puts it: “Two people made you, four people made the two people who made you, eight people made them, etc. etc.” so if you go far enough back, we are all family. But STILL.

My friend Heather came over on Tuesday to watch my morning routine with Grace so she sorta knows what to expect in Costa Rica. I picked up our tickets today. My passport arrived on Monday (another scratch off the 101 list!). It’s all happening! Heather swears up and down she will not get sick before we leave. I told her to take Cold FX every day, I will buy it for her, whatever! Just don’t get sick! She says she won’t so I will believe her.

Part of my rough 24 hours happened last night when I almost fell. Falling for me now would be an even bigger deal than it ever was in the past. Anyway, I can barelyifeven walk without my AFO on, so after home care leaves (she removes it) I like to use my Chi Machine and then I need to lock the door behind her, then make it to bed in one piece. My Chi Machine is acting weird lately and moving across the mat as it shakes, and last night was really bad so I gave up because when it moves it hurts my ankles (your leg position is important with that thing, if it doesn’t stay still it may be time for a new one… well worth the price). Anyway, I got up and walked to the door and thought “man, this is getting harder again”, locked the door, slowwwwly turned towards my bedroom and stumbled. I JUST managed to save myself by landing with my back against the wall and slamming the breaks on my walker really fast. My cell phone and water bottle went flying and I could feel myself slipping. I was thinking, “oh no, here I go” and wouldn’t that have sucked, with my cell phone out of reach! But I put as much weight as I could on my right leg to pull my left foot into a stable position. Then I made it to my bed and collapsed in tears. Those “holy shit, that was close” kinda tears. With my water bottle on the floor in the hallway (which I need to take my night and morning meds) and me afraid to try walking again, I knew I had to call someone (phone on bedside table, thank God). I chose Shawna because a) she’s an awesome amazing friend and b) she lives close and has keys. So I called her and felt like an idiot asking her to come help me for what seems like a silly reason! Of course she came by and helped me get settled. How pathetic would you feel if you needed someone to drive over to your place because your water bottle and cell phone is on the floor in the hallway? Yeah. Welcome to my hell.

That was yesterday, and today I had another “accident” with my bowels. Fourth time in two weeks. Seriously about the worst thing that can happen in your day. I’m still waiting for my evening home care to come and clean me up. It happened about 5 hours ago. So, yeah, not a great 24 hours. And tonight I am not using my Chi Machine or walking without my AFO. I will take it off myself while sitting on my bed. I’m not feeling so steady.

Tomorrow is another day.

And so it was. The above was written on Thursday, and Friday was a MUCH better day because I got to go see THE POLYJESTERS!!! I did feel stronger in the morning but by 2:00 I was done for the day. BUT you don’t miss an opportunity to see The Polyjesters when all the help you need is willing and able to take you. Shawna came by around 6:30 and we got me all ready and out the door. Getting to the new Ironwood location was a hassle because the sidewalk was not wheelchair accessible (must call the City about that) and then once inside I found out the venue itself is not the wheelchair accessible place I was promised by the staff it would be. The bathroom, according to Shawna, has a W/C accessible stall. BUT, there is a step to get INTO the bathroom, so WTF good does that do? Good thing I wore my “justincase” Attends underwear. Plus, the bathroom is right at the front door, and there is no way in hell to get from your table to the bathrooms in a wheelchair once you’re in. I had to roll behind the bar to get to my table, and then was told “oh! We thought you’d come in the back way, there is a ramp beside the stage and your table is right in front of the stage”. So I had a great table, and sure enough there is a ramp beside the stage heading to the back door, BUT, as we found out when we left that way, the ramp leads to the back entrance where there is a gigantic step (that’s STEP) down. Luckily when I cried out “oh no, a STEP!” Jason and Aaron came over and assured me they could carry my chair down it. So I closed my eyes and let out a little yelp as they brought me safely to the ground. Remember, not exactly 90 pounds over here.

Accessibility (and the fact yet another restaurant doesn’t understand what “gluten free, no bread with my steak sandwich” means to a person with Celiac disease like Shawna) aside, it was an amazing show!! My mom and Bob joined us, and I got to see my friend Kim and her hubby that drove in from Red Deer. And a few other Poly Regulars like Damien and Kelsey and the PolyParents. The show was one of the best I’ve ever seen! Scott Duncan was there to join them on fiddle for several songs, including their “Orange Blossom Special” they used to always play when they were regulars at Epcot Center in Florida back in the day (called “Fiddlestix” back then)… complete with a medley of Disney tunes and corresponding dance moves. If you GO HERE you can scroll down and preview a taste of it, song #9. But that won’t be enough, haha! Preview song 8 too, and tell me you don’t want to see that live on a stage right in front of you! I want a Scott Duncan on my speed dial. I also have a photo of him from 2004 licking his own nipple. I need to remind him of that.

Anyway, in case that isn’t enough of an indication, it was a very high energy, fun and mind-blowing show. I lasted with my head up the entire time, but left the second the show was over. Made it home in one piece and was in bed at 1:00 am! Mom and Bob spent the night here and we all groaned when home care showed up at 9:00 am.

Now it is Sunday, and the past couple days I have decided it’s not worth the risk of walking without my AFO, so I haven’t used my chi machine at night and keep my brace on right until I get to bed. I am better able to walk in the morning, after a night of rest, so getting around until home care puts on my AFO has been okay. Also, for my morning Chi session I found a cushion I have fits perfectly between the machine and the wall to keep the machine from shuffling away, so that’s good. I do hope the problem with my foot/leg is temporary (again) and I’m able to walk (again) soon. The EMS has to get working for me (again!) We took a break from it when my bladder was too crazy and we forgot to get back into using it. So we fixed that today and No More Breaks!

CCSVI update: I just got another call from my BFF Dr. Kirsty Duncan, the awesome Liberal MP who is working her arse off for us (she has not gone to bed before 4:00 am the past two weeks). I had sent her an email about what that MS Society funding of CCSVI research really means (what a joke) so she could be up to date before the debate tomorrow in the House of Commons. She’s also aware of the situation with Barb Farrell (that’s manslaughter, plain and simple) in Barrie and has lots of personal stories to talk about. The more stories that get out there, the better. Soon even the general population that isn’t affected by MS will sit up and take notice. I told Kirsty I’m booked into Costa Rica for treatment July 10 and I thought she was going to fall out of her chair, she was so excited for me!

I want to publish this before my evening home care arrives, which will be in about 10 minutes! Ciao.

So much going on lately! I need to organize some sort of fundraiser to help cover the costs of my Liberation treatment, but it will have to wait until after the procedure because there is just too many other things to deal with right now. Moving this month, making all the arrangements and actually going away for two weeks in July, and setting up Self-Managed Care. I finally got approved for it, so I need to set up a business… open a bank account, set up payroll and WCB accounts, write the job description, and start interviewing caregivers and hopefully find a few that can cover the times I need. It will be part time spread over 7 days/week, morning help and evening help. I have until August 15 to get it all set up.

Sigh.

Of course, I can always hope that post-liberation I won’t need as much help. That would be BEYOND awesome, but I can’t count on that 100%. There are a lot of things I need to wrap my head around and seriously commit to. Fixing my veins is only part of it. It’s not going to cure me, but it will hopefully give me an opportunity to heal my body without the worry of further progression. With fatigue, brain fog and hopefully blurry vision lifted, I will have the energy and desire to work on myself again. Diet, exercise, meditation and a good range of supplements related to vascular health will be a necessity. A total necessity. If I am given the gift of feeling better and able to do more, I can not take that for granted. If my lifestyle and frame of mind stays the same, I will find myself right back here before too long. There is much work to be done and I’m counting on that 10 day recovery program in Costa Rica to give me a good start in a new direction. A new life. A NEW LIFE! I am sooooooooooooooooooooooooooo excited!!!

The fight for the right to CCSVI treatment in this country continues on a daily basis. One of the people in our court is the amazing Dr. Kirsty Duncan, Liberal MP for Etobicoke (Ontario) North. This lady is working so hard to help us! It’s fantastic having her on our side. The more politicians, the better, because they can actually make the changes from within. May 26 was National MS day, so I took the liberty of emailing every MP in the country about this. I sent Kirsty an individual email though, to thank her for all the work she is doing, and told her a little about myself and why this is so important to me. The following evening she emailed me back, stating she had tried to call me twice but couldn’t get through because I don’t accept calls from private numbers. So before bed I removed the Call Screen, and let her know by email that it was safe for her to call. That was at 9:45 pm, 11:45 pm in Toronto, so I was expecting I’d hear from her the following day. But, at 10:15 my phone rang! I saw the “private number” and thought… “no way!” and answered it.

We talked for probably half an hour. What a fabulous lady. I honestly felt like I made a new friend. She gave me her personal email address and asked me to contact her any time I need to talk. I cried a lot during our conversation; not so much that I couldn’t speak (the “ugly cry”) but enough that she knew how emotional this all is for me. She told me “you’re so strong! I can hear it in your voice! You’re a fighter!” We talked about my musician friends (possible benefit concert or two!) and my kitties. I told her about my time in the care facility and how afraid I was that I would have to give them up to go into assisted living. “But you didn’t!” She said. “See? You’re strong!” She is so passionate about helping us and is working around the clock. She must have given up everything else she was ever working on, to focus on this. I mean, calling a chick in Calgary at 12:15 am? Way to make me feel important!

Today in Parliament there was another meeting of the Subcommittee on Neurological Health, and there were many great speakers, including Kirsty. The one who made me BAWL was Steve Garvie, a secondary progressive MSer who got his life back after Liberation. He moved out of his assisted living apartment 3 months ago!! He talked about pride (how he had none, like me… everybody has had to wipe my ass and see me naked, there is no pride left here) and suicide, for the same reasons I think about it. You can hear everyone speaking on this audio. It’s long, but so worth it, after you get over the kafuffle about the slides needing to be in French as well as English. I started to cry when Dr. McDonald said “I’d like to point out that Rebecca Cooney is back with us today, (Rebecca spoke at Parliament a few weeks ago), and this time she walked in without a wheelchair, she had her venoplasty done in New York a little over a week ago, she is doing just great.” There was applause, and I broke down. Can you imagine?

I’m meeting with a caregiver tomorrow about coming to Costa Rica with me. I sure hope that works out! She sounded great on the phone, so fingers crossed. Also? I was looking at flights online and the return ones are fine, but all the ones going TO San Jose have, like, 12 hour layovers in Dallas! NO! I better be able to find something better. It should only be a 7ish hour flight + connection. There MUST be better connections than that! Also? Air travel in July is friggin’ expensive.

My awesome House Call Vet came over yesterday to trim the cats’ claws. I didn’t want to need to call a vet to come out here just for that, $$$, but whaddaya do. I haven’t been able to find a mobile pet groomer to do that, and it needed to be done. Especially before the move, to kinda save the poor person responsible for getting them in the cat carrier. Pita was easy to catch, she’s always in your face, but squirmed like crazy when he trimmed her. By the time he got to the back paws she was bitching, but no hissing, so he managed to finish. Pepper, on the other hand, was hard to catch. He earned his money chasing her around! At one point he got the step ladder out of the closet to get her from on top of the kitchen cupboards, but she escaped. He worked up a sweat. Finally he got her the second time she jumped on the cabinets, and whisked her into the bathroom. She didn’t squirm, she kind of froze up once he actually got a hold of her. Anyway, that’s done. It cost about the same as me getting a mani/pedi, so if I can spend it on myself, I can spend it on them. It’s life changing for us all when their claws are short, so it’s worth it! No more “OWWIE” when they knead on me. (They hate it though. So noted when Pita tried to jump up the back of my chair and claw her way to the top and she just fell off. Oops).

The above was written yesterday and I received a call from the caregiver I was going to meet with that SHE CAN’T GO! Major panic. I have to find someone TODAY. Damn damn damn who doesn’t want to go to Costa Rica for two weeks?? This is harder than I thought.

I just found video on You Tube of Steve Garvie’s speech from yesterday! You must listen. It is stunning and you will cry. I bawled because his “before” situation is pretty much the same as mine and if I could get that kind of “after” result… wow.

Yesterday we had a power failure all over NE Calgary. I was sitting here in my lift chair, writing this entry and thinking “need to get up to pee in a sec” and then POP everything went out. Including phones and internet. So I’m stuck in my chair (which I now can’t get out of because, well, it’s electric) needing to pee. I tried not to think about it, trusting the power would be right back. After about 15 minutes I did start to panic, and THIS is why I keep my cell phone on my walker tray and NEVER take it out with me, because I will forget it’s in my purse and leave it there and be unable to get it at times like this. So I called my dad from my cell and asked him if he could bring over a couple 9 volt batteries so I could get out of my chair (I forget sometimes that TWO 9 volt batteries only work for ONE lift out of this chair as back up power). He was half an hour away and I really needed to pee so I tried Shawna, who lives close. Her power was out, too, but luckily she had the car (the BF usually has it in the evenings for work) and was able to come right away, after a quick stop at the dollar store for batteries. About 10 minutes later the power magically re-appeared. Of course. So I got up to pee and Shawna arrived with batteries and we ordered in dinner (least I could do!) Then another 10 or so minutes later, my dad arrived with batteries. So there is a fresh set in the back up power bar and extras in the drawer. Hopefully this won’t happen again! I don’t know what I would do if our city had to suffer though a power outage for days, like many other cities have. What do the disabled people do, stuck in their chairs and lifts and power beds and no A/C or even a fan? I’d die!

Between working on this update I have been making a zillion phone calls and updating the CCSVI Calgary mailing list and website and sending out notices and blah blah blah. Busy day. My procedure date got changed to July 10 because it’s a Catholic country and they won’t do procedures on a Friday for a Sunday discharge. So I go on Saturday for a Monday discharge. Interesting.

I’m beat and my eyes and hand are done for the day, so CIAO.

The previous post is what blogs are for. No, not to beg for money, but to vent and whine, get it out of your system, and then feel better. I felt a lot better after I wrote that post last night. Sorry you had to witness that, but it was good for me

Today I made a big decision and paid a $1,000 deposit towards Liberation Treatment in COSTA RICA. baby! It’s through a medical tourism company, and I had been on their list for awhile, originally for Poland. Then they changed their minds and put together a package for Costa Rica. At first I was weary of it, but after looking into the package and the doctor heading it up, I thought it sounded pretty amazing. I thought I was pretty far down on their list, however, and didn’t expect to hear. Then my friend Annette said she got booked for June 28, and I knew I wasn’t TOO far behind her. On Saturday I was scrolling through my missed calls and saw “Passport Medical” had called on Wednesday! I screamed! They didn’t leave a message, the buggers! I immediately called them and left a message, not expecting to hear back until Monday, but they called me right back! And offered me a date of July 9!

So I freaked out and thought about it and thought about it. I found out Shawna would not be able to go with me, because it is a 13 day program, and she doesn’t have enough vacation left. So that put a damper on things. Two weeks is a long time to expect someone to leave their job/family for. And then I thought this one might be a bit more expensive than the other places, but it really isn’t. If I went overseas, I’d need to fly first class because there is no way I can sit in an Economy seat for 20 hours. And hotels and car rental in the US would be more, and I’ve been quoted as low as $7,000 to as high as $80,000 so who really knows? And no one else has given me a date yet. And, Costa Rica? Come on! Paradise. And I like the 10 day recovery program they make you stay for:

• Evaluation before and after surgery
• Manual lymphatic drainage
• Kinesiology respiratory techniques
• Specific forms of electrotherapy
• Adapted exercise
• Mobilization techniques
• Relaxation techniques
• Multisensory assessment

No one else does that! It’s procedure, then back to your hotel and go home within a couple days (not that they aren’t giving excellent care, because they are, but still) so THIS sounds fantastic. And I deserve a nice, relaxing getaway, don’t you think? Yes.

So I took a deep breathe, paid the deposit, and quietly freaked out.

I. CAN’T. WAIT.

I still need to confirm a caregiver for the trip, however. I’m sure I will find one, I have a few options coming forward. I hope to confirm and book flights this week! EEEK!

Of course, this life saving opportunity comes at a price (please read this article to see the kind of bullshit we are dealing with) and if you can help at all, you know what to do. Good vibes are also widely accepted.

THANK YOU!!

It’s the end of May and we had a snow fall in Calgary yesterday. It’s gone now, but it is cold and rainy and absolutely ridiculous. It’s JUNE this week, people! Where’s our sunshine and roses?

I’m not all sunshine and roses these days. Nope. I’ve been doing some thinking about my life, brought about by listening to Peter Katz’s incredible new CD. Please watch this video and listen to what the song is about:

So, basically, it’s about a guy who was diagnosed with a terminal illness and instead of panicking about all the things he still wanted to do in his life, he was able to say, hey, I’ve been doing it all along.

And I’m all, you know, a few years ago I could have said that. I was living my life to its fullest, MS, wheelchair, and all. That great weekend with Rob Szabo and the band at the South Country Music Fair. Traveling to Toronto and Montreal after that, to see more live music and visit my friends there. What an awesome life I was living, and if I had died a few weeks after that, I would have died doing what I love and living a full life. Friends, live music, travel, shopping, eating out, lattes, working when I wanted… But NOW? I feel as if my life has been robbed from me. Don’t tell me to “live your life to the fullest” or “live each day as if it’s your last” or whatever the hell. I CAN’T. I have no fucking life. It’s been taken from me and now I get to live out the rest of my days in this fucking chair in front of my TV, unable to leave the house on my own, struggling to get in and out of bed, unable to carry on a social life outside of this room, Facebook and Twitter, unable to LIVE. a LIFE.

So, that’s how I’m feeling these days.

I honestly believe the Liberation Treatment is my ONLY hope to get some semblance of my life back. There have been a lot more Canadians coming back from Poland, Bulgaria, and other treatment locations in recent days and I’m hearing soooooo many great stories it’s making me cry every day. One man in Halifax, who is secondary progressive like me, is able to walk with just a cane again. He said the procedure put him back about 5 or 6 years, mobility wise. I would give my eye teeth for that! FIVE OR SIX YEARS! You know what I was doing 5 or 6 years ago? Living a damn good life, and probably taking a lot of it for granted. What I wouldn’t do to go back there to cane-land…

So, that being said, if you are on Facebook please join my Hope for Liberation group, and remember how in the past I used to do those Pay It Forward projects at Christmas, to raise money for people in need? Well, now I am in need. I think I have lost a lot of readers over the years due to my lack of updates and most likely my overdoses of MS talk and too few cat pictures, but if any of you are still out there, this is the time to let me know. I could use a little pay-it-forward myself to raise money for my Liberation, where ever that ends up being. Flights for me and a caregiver, hotels, car rental if needed, food, the procedure itself… I’m looking at about a $20,000 price tag. Which I will gladly go into debt doing for the chance of getting my life back. But I sure could use some help! If you can spare a few dollars…

THANK YOU!!